​Since 2006 the Liverpool Young Person’s Advisory Group (part of GenerationR Alliance) have been helping researchers shape paediatric research to best suit the needs of children and families faced with the decision to participate in clinical trials.

Providing the tools to aid the decision to participate in research

Making the decision to take part in a trial can often be difficult and children and families are often faced with a great deal of information that may not make a great deal of sense? More often than not the information they receive about a study is too long and complex, adding unnecessary barriers to participation.

It is really important that children and families are given information that is accessible to all ages and abilities and they fully understand what is going to happen to them throughout the duration of the study. We as a group have reviewed 100s of patient information leaflets and normally give very similar feedback, for example:

Too long (18 pages in some cases)

Repetitive

Too much jargon

Too complex

Too technical in parts

Lacks colour

Looks dull and uninviting

It’s no wonder children and families struggle to make the decision to participate in research? In this new digital age isn’t it about time we looked at alternative means of providing information to children and families? We believe so and we were delighted to provide input into the TRECA study, which stands for TRials Engagement in Children and Adolescents. The project aims to improve the information children and adolescents are given when they are invited to join a medical trial. The project will design multimedia information (MMI) resources to be used alongside patient information sheets to inform children, adolescents and their parents about taking part in a medical trial. They will be a mixture of text, audio, video and animations and might look something like a website.

​The MMIs will be developed with the help of children and adolescents with long-term health conditions (and some parents too) The research team will also be supported throughout the project by a Patient and Parent Advisory Group made up of four young people (including several members of GenerationR Liverpool Group) and parents.

Without accessible and child-appropriate information, researchers will struggle to recruit children and families to research studies, thus impacting on the advancement of healthcare for children. We as young people have a key role to play in ensuring this doesn’t happen.

You can follow the work of GenerationR Young People’s Advisory Group via @GenrYPAGs and www.generationr.org,uk

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We are delighted to host guest blogs from our fantastic followers. Blogs come from patients, members of the public & from healthcare professionals. They focus on why people are involved in research, what it means to them and what they would like to see happen in the future of research.

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